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Very young with RLS. HELP!!

Posted , 15 users are following.

Tid42775
Tid42775

I've been battling this for two years now, and I've been on medication for a little over a year. I started taking only Mirapex at first, but found that raising the dosage made me extremely sick. My doctor now has me on a small dose of Mirapex as well as Klonopin at night. Being so young, I'm worried about the long term effects of the Klonopin.

Does anyone else my age have RLS? My doctor has not been very helpful. He's never seen anyone even close to my age that has it. My iron levels as well as my kidneys are fine, so I know those are the causes. Has anyone else had any help with any home remedies? Or has anyone else found a cause? I know this is more common in older women, and with being diagnosed so young I'm worried about how this will effect my quality of life as I grow older. I don't drink caffeine, and I try to drink as much water as I can.

I would love to hear of any other factors that may be causing this. I would also love to hear of any suggestions on specialists to see or other remedies to try.

0 likes, 14 replies

14 Replies

  • Tid42775
    Tid42775

    Posted

    Forgot to mention, I'm 21.

  • martin45332
    martin45332 Tid42775

    Posted

    Hi

    quite a big age difference as my wife is 67 but she has been on 1mg of clonazepam for 14 years with no ill effects. I have RLS but haven't found anything that makes it particularly worse. The clonazepam I take when I go to bed gets me to sleep but staying in bed is a challenge. I was up at 5.15 this morning. I make a point of never sleeping during the day so hopefully tonight will be better. You have my utmost sympathy as my neuro problems only started two years ago. I am 68 so in a very different age group but wanted to share about the Klonopin.

  • coral81968
    coral81968 Tid42775

    Posted

    You poor thing I have had it since I was 27 and I thought that was young I started of on mirapexin to lasted 5 years before they augmented ( stopped working ) I am now on ropinarole  and these are fab I am on 1 every 3 hours now but I can take up to 16 a day and they also do a slow release tablet over 24 hours  that I have I use them when I am on holiday or on a flight as for natural remedies they say tonic water is good for it so I drink that and also don't eat to much sweet stuff I find it's worse when I eat chocolate so that could be true I hope you fine an answere as living with this is exhausting 

    regards coral

    • nancy71417
      nancy71417 coral81968

      Posted

      mine is greatly relieved by as low carb as possible. I guess I could try a lot of chocolate and see what happens!!
  • deborah1964
    deborah1964 Tid42775

    Posted

    Hi there I suffer terribly with RLS so know just what you are going through. I'm now taking ropinerole (a drug used for Parkinson's) it works brilliantly, but not happy that I have to take such a strong drug . I tried all sorts of other ideas nothing helped. There seems to be no clues as to why we get it or a cure for it . I'm sorry I Can't offer any advice . Please keep me informed if you do get any suggestions from anyone because I will try anything and would love to be able to come off these pills and use some natural remedies regards and take care Debbie x 

  • glen_30598
    glen_30598 Tid42775

    Posted

    Hello

    Do semi squats on one leg till it burns and you cant do any more , shouldnt take more than a minute or so then the other leg. do this before bed,if it reacures repeat. This tekneek works very well, somehow the build up of lactic acid from the squats negates the RLS, 

                                            let me know how this works for you

  • nancy71417
    nancy71417 Tid42775

    Posted

    I have been on clonazapam 0.25mg to 1mg as needed since I was 45. I am 63 now. I could never tolerate the Parkinson's meds, very nauseated on several. At first I just took clonazepam every night, then I started waiting to see if I was going to need it, which I usually did, but it seemed to work very quickly. If I woke up at 1am with it I would take a smaller dose. Then about 3 years ago, I went on a very low carb diet for blood sugar regulation (hypoglycemia, I have never been overweight) and my RLS 90% went away, I am serious. (it also relieved my mild case of IBS) On doing research, I read that in the old days, they treated children with seizures with a low carb diet as they had no medications for this. RLS is neurological too. Anyway. Now a Rx for clonazepam lasts me 6 months. Except on the plane, I have had to take 1-4mg on a plane, I bring lots with me on a trip because of the plane effects and eating off the plan. I have tried no caffeine and no alcohol and various magnesium calcium preparations, herbal teas etc, nothing works. I have not tried the knee bends/squats. 

    • martin45332
      martin45332 glen_30598

      Posted

      This must vary from person to person like all medication possible side effects. I was on 4mg of clonazepam and came down to 1 by weekly increments of 0.25. I had no side effects. The 1 I now take with 600mg of Gabapentin and they get me to sleep quite quickly and I manage about 5 hours of sleep before restlessness wakes me.
  • lisa_21709
    lisa_21709 Tid42775

    Posted

    I have had This for 4 years I think mine was triggered by trauma I have only just turned 40 the I have pramapoxal this worked for a while but it triggered again I researched a while back found diazepam realaxes the muscles I have been given them and it's helpline at the moment but I find something in my life triggers it and I am back to square one sorry I couldn't be more help I know how it feels it's like I want to chop my legs off but the diazepam is working and I am sleeping

  • MME97
    MME97 Tid42775

    Posted

    I've had this for 16 years and it's awful.  I'm only 37 so I feel your pain.  I hated taking the pills as well.  They made me crazy....I don't have any iron, magnesium or kidney issues, but I have peripheral neuropathy which causes mine.  You may ask your doctor to try the Neupro (rotigotine) transdermal patch.  I took many different pills over the years and HATED the side effects.  The patch brings me some relief with limited side effects.  I hope you can find some relief.  Maybe this will help.

  • kathy00483
    kathy00483 Tid42775

    Posted

    2 most effective things for me, soaking in a hot bath and using a bean bag as follows:  I make my bean bags with flannel and the cover with fleece.  8 inches by 20 inches, fill with approximately 6 cups of winter red hard wheat berries (so when laying flat about 1 inch high).  Heat in microwave for 2-3 minutes, take out and move around to mix wheat berries, and heat another 2-3 minutes.  Lie in bed face down with rear end up (looking cute:-), and bag at back of knees, between both legs, touching thighs and calfs.  Instant relief.  The wheat berries will stay warm for up to 30 minutes. Adjust legs to what is comfortable over time. 
  • carol10992
    carol10992 Tid42775

    Posted

    I've had RL for about 30 years. Everyday and every night untill I'm knocked out by a pain reliever p.m., or Benadryl.

    I get maybe 4 or 5 hours total sleep each night.

    My legs have been worse so my Dr took me from mirapex to Ropinirole ( requip) and clonazepam.

    Reading this forum I see I'm not taking a large amount of either.

    This is my 2nd day....and My legs are very bad. I was up and down off the floor last night trying to get some sleep. It's been years since I spent a whole night in a bed, so I leave my bed as to not wake my husband.

    I do know sugar affects my legs. Before it has been in my stomach very long my legs act up.

    IM LOOKING FOR A DOCTOR WHO HAS RESSLESS LEGS............

    IVE Been to family physician for many many years,

    Chiropractic,

    Vascular surgeon ( he asked me what it felt like)

    Sleep Clinic (they told me I slept fine)

    With RL.....I'm going to have to Doctor my self. Get the pills from the Doctors but do the dosage that seems to help me.

    We with RL probably very well understand what Michael Jackson was living with not being able to sleep.

    Anyone with a miracle cure please let me know.

    Squats don't work for me I have two bad knees.

  • Flying_nun
    Flying_nun Tid42775

    Posted

    I would strongly recommend checking the RLS Foundation website.  It will list names of M.D.’s who treat RLS in your state.  Not all meds work for everyone.  I suffered most of my life until recently I found Dr. Risk in Marlboro and discovered that I have a problem with iron metabolism.  I now have gone from almost 24hrs/day of symptoms to nearly none.   Do not give up; I had to do the research myself because the general medical community lacks the recent research.  Johns Hopkins and Mass. General both have RLS programs.
  • angelika58296
    angelika58296 Tid42775

    Posted

    Hey,

    in general, i think most people connect Restless legs with an axcess of energy. Meaning more movement or/and eating less(esp carbs) might help. Personal, I experience it more intense when I‘ve been lying around and eating a lot.

    This one‘s maybe a lil different:

    A natural and little dangerous medication could be Cannabis. You can smoke it or just have some CBD oil, which is just very relaxing. Indeed, Marhjiuana is considered a drug but

    - you cannot overdose, meaning you cannot die

    - physical addiction is not possible

    And besides that it is a natural pain reliever so it‘ll numb you. Don’t get offended by that idea, I don‘t want to get anyone into drugs. But I think the Cannabis plant is very powerful and I feel like it helps me with Restless Legs smile

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